frustrated and need help - Immune Disorders Message Board

Xanadu3 · 06-30-2004, 10:36 AM

Hi all,
Newbie poster. I will try and make this brief. I'm very frustrated. History: 36 yo female, open heart surgery for mitral valve repair in 2000, labs positive for celiac sprue but biopsy negative, ANA positive 1:320(speckled), two miscarriages, then complicated birth of son, migraines for seven years.

Now it's been a crappy month. I had a TIA and was in the hospital for 4 days. Three spots showed on MRI. EKGs, CAT scan, TEE, echocardiogram, etc. They started out saying "complicated migraines", then "throwing clots from the heart valve", now it's kind of back to the "blood clotting problems."
I don't drink, smoke, have diabetes, take birth control pills, or have a history of young stroke in the family. I've been on Topamax (for the migraines), now they have me on Aggrenox (blood thinner). I had already been taking baby aspirin for the last year. So you wouldn't think this would have happened. I've had the TIA problems three times now this month, with minor symptoms that come and go. I have a great Rheaumy. He is testing the anticardiolipid again. (It's been low + before.) All other work came back fine. I see the neuro and cardio guys again next mo. Up to this point, my DX has been undifferentiated connective tissue disease w/some Raynaud's syndrome added lately.

Any ideas? I know they don't know what to do with me besides put me on blood thinners and send me home. They tell me "It won't happen again." (because of your age). I'm thinking, "I didn't think it would happen the first time!!" To top it off, I had to put my dog to sleep this week. Thanks for listening.
Health & happiness to all.

Marimac · 07-05-2004, 06:32 AM

Quote:

Originally Posted by Xanadu3

Hi all,
Newbie poster. I will try and make this brief. I'm very frustrated. History: 36 yo female, open heart surgery for mitral valve repair in 2000, labs positive for celiac sprue but biopsy negative, ANA positive 1:320(speckled), two miscarriages, then complicated birth of son, migraines for seven years.

Now it's been a crappy month. I had a TIA and was in the hospital for 4 days. Three spots showed on MRI. EKGs, CAT scan, TEE, echocardiogram, etc. They started out saying "complicated migraines", then "throwing clots from the heart valve", now it's kind of back to the "blood clotting problems."
I don't drink, smoke, have diabetes, take birth control pills, or have a history of young stroke in the family. I've been on Topamax (for the migraines), now they have me on Aggrenox (blood thinner). I had already been taking baby aspirin for the last year. So you wouldn't think this would have happened. I've had the TIA problems three times now this month, with minor symptoms that come and go. I have a great Rheaumy. He is testing the anticardiolipid again. (It's been low + before.) All other work came back fine. I see the neuro and cardio guys again next mo. Up to this point, my DX has been undifferentiated connective tissue disease w/some Raynaud's syndrome added lately.

Any ideas? I know they don't know what to do with me besides put me on blood thinners and send me home. They tell me "It won't happen again." (because of your age). I'm thinking, "I didn't think it would happen the first time!!" To top it off, I had to put my dog to sleep this week. Thanks for listening.
Health & happiness to all.

It sounds like you have been through the wringer this past month. I wonder have they tested you for an allergy to your own adrenalin? The reason I am asking this is because of the lack of history of the habits that cause most people to be sick. Same reaction but If you have not been tested for an allergy to adrenalin, ask for it. It won't hurt anything but may help in the long run. Good luck.

Xanadu3 · 07-06-2004, 07:48 AM

Marimac, can you tell me more about this allergy thing before I ask for test? That's something I have never heard about. Very interesting. Thank you for your input. I go to the neuro on 12th and Rheaumy on 13th. They are talking about switching me from Aggrenox to coumadin. (Don't know if this is good, bad, or indifferent.

) I have a scrip for Plaquenil, but haven't filled yet. I've been dragging my feet. Has it actually helped any of you guys? I'm worried about side effects and taking one MORE thing! Take care. I'm not feeling so alone anymore...
Health & happiness-

teachergirl64 · 07-12-2004, 06:32 AM

Hi! You ought to go to the lupus forum and read the sticky thread on APS syndrome. Print it off and take it to your doctor. Positive blood work isn't necessary for a diagnosis! I'm on Plaquenil and it isn't as scary as I thought it would be. I felt like I had morning sickness for the first 3 weeks I was on it, but sipping on peppermint tea help and now it doesn't bother me at all.

Xanadu3 · 07-16-2004, 11:42 AM

Hi all,
Just an update. Go for another MRI of brain this afternoon, nerve testing of arms and cardiologist on Monday. They also want to test for CADASIL. Not switching to coumadin, staying on Aggrenox. That's the skinny for now. I'll keep you posted. Take care.
Health & happiness-